The struggle for a child's health

The campaign that Stephanie Griggs organized for her 4-year-old daughter forced an insurance giant to back down

FOUR-YEAR-OLD Isabella Griggs won the fight of her life when her insurance provider United Healthcare (UHC) agreed--after feeling the pressure of hundred of e-mails and phone calls from Isabella's supporters--to cover necessary rehabilitative training.

Isabella's history of medical problems and complications--she's had six major surgeries, including open-heart surgery--has left her unable to swallow food through her mouth, so she is fed through a "G-tube" (a gastric feeding tube), which is painful and carries some health risks.

Last fall, the Griggs family found a promising program for Isabella at the Kennedy Krieger Institute (KKI) in Baltimore. They spent $1,000 out of pocket to fly there from their home in Watertown, Wis., for an evaluation.

Doctors agreed that Isabella was a perfect candidate for the intensive six-week program designed to train her to ingest food orally, because shorter programs she has tried have not succeeded and because, as she gets older, the possibilities for training her will diminish.

Yet when a space in the program opened up for Isabella at the end of November, the family's health care provider and one of the nation's largest insurers, UHC, balked. When they found out that UHC planned to deny payment for Isabella's treatment, her family was devastated. But her mother, Stephanie Griggs, decided she wouldn't take no for an answer.

The California Nurses Association Web site is filled with health care horror stories from both patients and providers, plus ideas of how to get involved in organizing for a change. Healthcare-Now posts a regularly updated calendar showing events around the issue of health care.

"She's four years old and if she doesn't get a program like this, she's going to be G-tube fed for the rest of her life," Stephanie said in an interview at the Griggs' family home. "That's huge. Right now, every decision they've made is driving our entire life."

Because of the care Isabella needs, Stephanie said, "She's never been to a friend's house. I can't do that for the next 18 years. I just want her to be able to sit down at a table with her friends and eat a cheeseburger. I don't think that's asking too much."

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FROM THE beginning, UHC seemed determined not to pay for Isabella's treatments. Six weeks after the hospital space opened for Isabella, the Griggs family learned that their insurance had decided the treatment was "nutrition-based" and, therefore, wasn't covered by the family's plan.

Then began a months-long process of appeals and UHC maneuvering. The company claimed to have lost the relevant paperwork--until Stephanie began mentioning the federal Health Insurance Portability and Accountability Act, which among other things ensures access to health coverage for people with pre-existing conditions. The papers mysteriously reappeared.

"We've been hung up on multiple times [by UHC]," Stephanie said. "The worst thing, though, is when they told my husband that we should just be happy with [Isabella] the way she is, because there's a lot of people who go through their entire life with a G-tube. And then hung up on him. That really hurt."

Since the insurance company's classification of the program as "nutrition-based" makes no medical sense, Stephanie suspects that UHC jumped at the appearance of the word "nutrition" in the six-page program description because they were looking for a reason to deny coverage.

Stephanie has already heard from another family whose child was denied coverage by UHC for the exact treatment Isabella needs--until a local politician stepped in.

"They're going to have to answer to someone besides their stockholders," Stephanie said. "They can't run their business on denying--that's how they make their profits, denying [care]. Somebody's got to stand up and say, 'This is not right.' Clearly, something needs to change.

"It makes me feel like a number," she continued. "We're not a name, we're not a face to them. All we are is a number, and a check that they get every month for our premium. I know she's an expensive kid. I know that they're not making money on her, but they are on a lot of other people. They made $4.1 billion in profit last year. And they won't pay for a $200,000 treatment. That's a drop in the bucket to them."

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WHEN THEIR appeals had been exhausted, Stephanie said, "I sat in my house for about a week and had a pity party, then I decided I was mad."

Stephanie thought about what the denial meant for her daughter's future. She thought about how much of her husband's monthly paycheck from his job as a television store manager went to UHC. And she thought about the end of her mother's life as she died of cancer two years ago, denied insurance coverage for an experimental treatment.

"My father is still paying hospital bills for my mother, who passed away from the delay in treatment and the lack of treatment she was able to get," Stephanie said. "The fact that we did go through that, maybe that's what made me fight a little harder."

Stephanie decided that at least she could expose UHC's callousness to the world. She made a YouTube video to document her family's struggles with UHC and put a human face on their case.

Reaction to the video was swift. Friends and family sent it around, garnering almost 3,000 views, and generating supportive e-mails from around the country.

Within a day, the video was picked up by the health care industry Web site TheIndustryRadar.com. From there, Stephanie says, the video was viewed by hundreds more, including nearly 100 UHC employees. One person left this comment at YouTube:

As a claims specialist for UHC, I will admit this is an absolute outrage, and this literally makes me sick to my stomach. To the family and friends, and Isabella herself, I am so very sorry what you are going through. If I can be of any help to you, please let me know. I will be as much assistance as possible.

Within 12 hours of the Industry Radar posting, UHC called Stephanie and, for the first time, didn't treat her rudely. "We had been told we had no recourse," Stephanie said. "'That's it, I'm sorry, have a nice day. And we'll take your premium out of your next check, too.'" Yet now a UHC employee was telling her they were re-evaluating her appeal, and that Isabella's treatment could be reclassified.

On May 23, Stephanie received confirmation from both KKI and UHC that her daughter had been approved and would receive the treatment she needs. In a letter to supporters that day, she wrote, "We have had help from so many family members, dear friends, neighbors, teachers, doctors, legislators, Web site owners, journalists, strangers and even a handful of UHC employees...

"It has been emotional rollercoaster, but it was all worth it. I thank you all for your efforts, and please know that you have renewed my faith in the goodness of people."

"I've cried so many tears over this for the last six months," Stephanie said. "But it was worth it, because she's going to get the treatment she needs, and maybe they'll think twice next time they want to deny someone health care because--because they can.

"I think they thought that we would give up. And I think many families would at this point. But if I've learned one thing from this experience, I've learned how to advocate for my kid. If you're middle class and you don't have the money for a lawyer, and they have hundreds of employees telling you, 'No, no, there's nothing you can do'--it's intimidating. The thing I learned is, if you truly care about something--fight for it."